Life after surgery with a J-pouch or ileostomy bag

A few weeks ago, I was asked by a reader if I would write about what life is like after surgery. I thought this a good topic so here goes – Life after Surgery – the short version!

A little background: I was fortunate to have graduated from Beloit College prior to developing any major digestive issues. Upon graduation, I weighed 180 lbs., had 6.5% body fat and was in the best shape of my life. I was a varsity swimmer, I played ultimate Frisbee at least five, if not 10 times a week, and I was a dancer often rehearsing four to eight hours a day. I share this, because prior to surgery it is vital you understand just how important my active lifestyle was to me. A few weeks ago, I mentioned the autobiography “Alive and Kicking” by Rolf Benirschke and will reiterate that it is a worthwhile read to anyone looking for inspiration, whether they have IBD or not (but especially if you consider yourself a sports-oriented individual). It was largely because of his story that I had the courage to have my first surgery.

One of my first surgeries was to give me an ileostomy, which I lived with for almost a year. This meant I would have to live with a bag on my hip for an indeterminate period of time. Would I be able to play Frisbee, dance, swim or do any of the things I enjoy doing? In the year I lived with the ileostomy, I tried to do all the things I had loved to do. Things came slowly. I had to gain confidence in every little aspect of everything I did. Playing Frisbee with a bag on your hip is restricting. Ballroom dancing was doable but in swing dancing I was more limited than I was used to. I tried to swim and even secured part of my bag in my swim trunks to help hold it in place, but I kept worrying that the glue holding it to my skin would unseal and the bag would leak in the pool. I eventually overcame that fear and became confident that the bag would be fine while I swam.

The good news from that first surgery was that I could eat whatever I wanted, and believe me, after being on intravenous feeding for many months, food was looking awfully good!

Even though it was limiting and life was harder with an ileostomy, I was scared to have the reversal surgery because for me there was the chance of several major complications. After much debate and discussion with doctors, I decided that it would be best for me to have the reversal. So, one after one year of living with ileostomy, I was on my way to a J-pouch.

I have now been living with a J-pouch for about a year. What is life like for me after that surgery? Fortunately, none of the possible major complications occurred, and my life is back to ‘normal’. I swim, dance, play Frisbee and most certainly date. I don’t have to explain my bag to anyone, nor do I worry about leakage which I always did when I had the ileostomy bag. These days all I have to explain is the concoction of drugs I take and the strange order in which I eat and drink on schedule.

I can say with absolute confidence, that (for me) with an ileostomy, I was so happy to be alive and pain-free that I even debated ever having the reconstructive surgery. However, now that I have had my reconstructive surgery, I can honestly say that I am glad I did it and would have it no other way. Each phase has had its ups and downs. Some are very up and some are way down. But what aspect of life with colitis, or for that matter, what aspect of anyone’s life with or without colitis isn’t like that? I know I have been through the ringer, but I choose to look back at everything that happened along the way and smile. Without it, I quite possibly would not be as confident and strong as I am today.

It took time for me to feel like I was in control of my life, and especially my bowels. It took time for me to understand the limitations of my ileostomy. It is still taking time for me to figure out my J-pouch, but I’m confident that it will all work out. Inflammatory bowel disease (IBD) in general is a challenging disease. There are no certainties or universal truths. Every aspect of the disease is challenging. It challenges doctors, it challenges our family and friends, and it challenges us before we even know we have it!

Even though it was a long road for me to get to this point and I had to make some very tough choices along the way, I am happy with my current situation. For some an ileostomy is the best choice, and for others a J-pouch might be the answer. My age and my desired level of activity played a major role in helping me decide which choices to make. Surgery is not something to opt for lightly and your doctor will better know what will work for you.

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ABOUT THE AUTHOR

Blake Weinberger

Blake was diagnosed with ulcerative colitis at the ripe old age of 22, shortly after graduation from Beloit College in Beloit, Wisc. Now 25, he lives in Georgia and is actively involved with the Crohn’s &...read more